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acceptance

Jasan has been going to the same public school since the age of three. He is now six. For the past two years he has been in the autistic program within the public school.

In the last IEP meeting we had, the team that works with him felt that some of Jasan’s behaviors were beyond what they were able to deal with. Destructive behavior without any reasonable or predictable antecedent. This is different from the year before and they feel like they are at a loss, therefore, the suggestion was made for him to be transferred to a therapeutic day school where they work with kids that are in a similar situation.

I was not averse to that recommendation. I want whatever is best for my son. I will do whatever it takes without hesitation. So, we (my mom and I) checked out the schools that they recommended and decided on the one that felt like it would be the best for him.

After the first visit, I was not expecting the emotions that arose within me. I was crying the whole way to work after our morning tour of the first school. Why was I feeling sad? Was I scared for him? Is this another feeling of loss to experience of a mom of an autistic child? He can’t make it in public school?

Probably all of the above, but I thought I was stronger than that. I thought, especially knowing the way I reacted to the idea from the team to send him elsewhere, that I was cool with it. NO big deal. It would be better for him.

During the second school tour, I felt good. In comparison to the first tour, this school kicked ass. I liked how the principal presented their mission and how he described the way the try to really understand why kids have the behaviors that they do. Actually getting to the root of the issues. Again, when I left, that strange wave of sadness took me down.

I have vivid memories of separation anxiety with my mom. BIG TIME. Almost debilitating to me. It was a horrible feeling that I wouldn’t wish on anyone, and I can see some of that in Jasan. I see a lot of similarities between him and me. Parts of little Heidi; emotional behaviors in my childhood that give me anxiety just thinking back that far. Gut wrenching feelings. In all honesty, that scares me.

I don’t think that he fully understands that he will be going to a new school in a month. We visited the new school (which upset him very much because our morning was out of routine) and once we got there, he seemed okay. Timid, but going with the flow.

In my mind, I was sad for him the night before. I was explaining what the morning would look like. The tears and the begging “I just to stay at (his current school)” was making my heart hurt. I don’t think I have ever loved so much to where my heart literally feels like it is being crushed to bits when he is sad. The thought of this transition and his discomfort is pretty paralyzing to me right now. I did not expect these feelings at all.

I get sick to my stomach and angry sometimes when I hear parents that have kids (that transition with no issues) say, “Kids are resilient. He will adjust fine.” I have no doubt that eventually he will be in a new routine and all be will okay. But, the transition may be something that creates distress inside that he may NOT forget. That happened to me. I didn’t forget, and it made a difference in my life in some respects.

I realize I cannot control every aspect of his life. I cannot save him from pain; from sadness. Again, having a child is such a lesson in life. Oh, letting go of control. That is hard one, especially when it has to do with what he is exposed to out of my sight. He is the love of my life and the closest person to my heart. Autism…ugh. He doesn’t tell me what happens play by play at school or when we aren’t together. He doesn’t share much at all. I am not sure he can yet. That is always something that I have struggled with. It’s really tough.

Today, after the visit to the day school with Jasan was rough for me. I don’t like the idea of him being so far from my office every day. Right now his current school is 7 minutes from me. Sometimes I think I have separation anxiety with him; there are days when I long to see him and can’t wait to be with him again. ❤

This is a lot to take in. For him, once he starts making the change. For me, taking in all of this new information and watching him go through this move. He needs to go to a special school and that is okay. It is not what I envisioned for him, but again I have to change the expectations in my mind.

Why is it so hard to just not have expectations? It is impossible.

I want him to be successful. I want him to be able to hold a job and be independent. Ii hope he is a scientist or a sound engineer…whatever his dream ends up to be. I want him to thrive in this life. I hope he finds the perfect woman who understands him like I do and that they are able to have a love that is beyond measure within a fulfilling relationship.

These are expectations I have for his adulthood because I love him so much.

If life takes a detour to get him there, then I guess so be it. This is my lesson to go with the flow and let go of my childhood memories of anxiety. At least I know how to spot it and can hopefully help buffer it for him. The feelings of anxiety and sadness are going to come up for me in the days ahead. I will try to keep my thoughts positive, but I need to get my feelings out as well.

I want him to FOREVER know how much my heart LONGS for him, and to know I could inhale him I love him so much. 🙂

Well, here I am…six months later after diving into Match.com and maybe a little Tinder here and there. It has been five years since I have been in a “with him everyday; part of each other’s reality” kind of relationship, and a lot has happened in life since then. For one thing I have become a COMPLETELY different person. For another, Jasan has grown up quite a bit and he communicates pretty well with me now. School is a full day occurrence; I work as close to full-time as I can since my work life pre-child…

I thought maybe it was time to be open to a romantic relationship.

I found out that it’s hard. Not that I thought it would be super easy. It is crazy how much over-thinking I was doing. What happened to the “fall madly in love blindly” feeling that you have when you are early twenties? Ha. I’m kidding when I say that, but it gets awfully complicated when you factor age, single parent status and autism into the mix.

During first couple of dates I found myself with this weird feeling of having to explain my situation, which I hadn’t ever had to do before. I almost was embarrassed to do so. Not embarrassed of Jasan; that is not what I mean. Embarrassed that I live with my mom and stepdad because I need someone else in this world, besides me, to know my little guy inside and out. I don’t have any free time like normal adults do. I sleep with my son. He still needs me. (This is always debated; I don’t even want to go there. My mom gut says he needs it. I know him and I will know when it is time to start separating.) I only have one babysitter option for nights out (my mom: Aka, “Grammie”). She isn’t readily available, so that means I can go out one MAYBE two nights a month?

Should I keep going?

Hell, what was I thinking? Any guy that I would be talking to would think I’m not date-able. Any guy who likes to spend a lot of time together anyway. I LOVE spending quality time. That’s my deal. That is what makes me tick when it comes to romance…but I don’t have that option.

Frustration.

As time went on, I was focusing on everything about my life that sucks. I mean what really sucks. The last time I was in that funk was when I had come to know Jasan was autistic. I had to mourn. I compared. I worked with kids at the time. Oh man…I would cry on my way home from work so many times. But then, a light bulb went off.

THAT IS NOT SERVING ME OR MY SON. CHANGE THE PERSPECTIVE.

Back then, I really needed to do that to even survive. Depression would have overcome me and I would have been worthless otherwise. Here I was, left to do this alone (which I thought would be do-able…but throw autism into the mix? Damn. Didn’t have a plan for that.)

So, the positivity angel swooped my soul up and gave me a new pair of glasses to look through. Life changed. I cherished all the beautiful differences my son has that other kids did not and just accepted him for WHO HE IS. Challenges and all. A little while later I started taking photographs of his “oddities” which I loved. I gained some momentum and Hello! to this project. Following Jasan was born and I started budding creatively, which I had not done in many years. I started learning more about myself, which basically is what parenting is all about. (Ha. Not what you expect pre-kid, at least your first one anyway.)

I was okay with not having a partner. I didn’t have time to focus on anything else but Jasan and me and figuring out life with autism. I dabbled in a long distance connection when he was younger, but in the end, we didn’t live in each other’s reality. That is not what I wanted. So, single was to be my status.

It took some getting used to, but after a while I didn’t miss it. I didn’t miss the male affection I was accustomed to receiving. In a weird way, I was thankful for this. I know being single and working on ME was something that I needed to do for a long time. It was something that life (circumstantially) forced me into, but it changed me none-the-less.

Fast forward to now, and here I am…back in the funk. I loathe the funk. It scares me, as someone who has dealt with depression since my childhood years. I realized though, it’s okay to want to do things. I miss out on a lot. DATING, soooooo many girlfriend hang outs, going to the movies, going out for drinks, doing anything adult, picking where I want to go to eat vs. where Jasan will eat, photography shoots with my friends, just taking time to learn stuff! Classes, whatever! Simple things like going to the store by myself. Shopping, being spontaneous, traveling, visiting my brother in Arizona… SO. MANY. THINGS. Even when we did finally get to go to Arizona this past Thanksgiving, I STILL MISSED OUT ON STUFF. Sometimes I just feel a big WTF.

But, here I am again. Time to change the perspective. During a really great discussion with my awesome boss, he suggested I listen to a specific podcast: an amazing story of one individual’s strength…and what stood out to me was: are you a VICTIM or a VICTOR?

I have lived the victim card now for some months. I am so done. I don’t like these glasses…I want my victor ones back.

I found them in an old drawer today. Cleaned em’ up and they are ready to wear.

I love my son more than ever. I am excited about our future. I am excited about the day we had today. We have some cool new things and are getting reorganized and that FEELS GOOD.

I am done focusing on LACK, because my life is full of beauty. It may not be your “typical” beauty, but it’s mine, it’s what surrounds me and I will cherish it.

This is a pretty vulnerable post. I wrote it for all the other parents who are held captive by their kid’s special needs. It’s great if you have a wonderful partner to help, but sometimes partners are no help either. Partner or no partner, it can feel EXTREMELY LONELY.

If you have felt this, it is possible to turn it around. Quit looking at what you hate and look at what you love.

The universe will deliver a very different experience to you. It has happened to me before and I know it will again. Try it.

He is my favorite snuggle partner. I am helping him to learn how secure he is, because he can feel the love from his mama. That is life-giving to me. ❤

I have to admit; I have definitely had a rough day. I am quite blessed to say that tough days where I let my emotions go down the negative path are few and far between. Today has been the exception to my positive streak. I am sure parents of special needs kids are here, where I am today, more often than not. Hence my decision to just sit and write.

I love my son more than I can even explain. I think that is why it feels so incredibly horrific when I have days like today. Days when I just give in to complete mental exhaustion. Why can’t I just have a day where I don’t feel like I am walking on eggshells? The mood swings can come out of nowhere and I some days feel like I am done with it. I am done with patience. I am done with overthinking. I am done with staying calm and looking at the bright side.

I wonder what it would be like to have him come to the grocery store with me and just comply? Or go to a movie with me and sit through the whole thing? Or be able to play like other kids do and just go be free for awhile? Or be able to handle a simplistic no? Not even a NO to something big. A NO to the smallest thing and here we go.

Mama has to tiptoe so that there is no meltdown.

I. am. so. tired.

This feels like a different stage for me. The toddler days are over. Now he is a little boy. His mind is maturing and wow things are different. Interacting with kids are different. I see how other kids AVOID him sometimes.

OUCH that hurts. A lot.

I do realize these are MY feelings, not his. I need to always put that forefront in my mind, but man, is it hard. I have bawled my eyes out driving home from friends’ homes where I thought that he would never be pushed away by the kids. Well, I was wrong. Big time. I had a little guy say to me (a situation where a bunch of kids were present, and obviously the boy didn’t realize I was Jasan’s mom) “Oh, HE isn’t staying the night, is HE?” with that annoyed tone.

HEART. BROKEN.

I have to realize the situation as it is. Not everyone sees Jasan as I do. This is a new stage of grieving for me, the ideas of a little boy and the things we would do and how life would be without autism. This experience of having a child is my only one. Every stage is a learning experience, but now with autism involved. Completely different than what I imagined pregnant with a little munchkin in my womb.

But even as I sit here and write this, he is playing with water in the sink. He just said the cutest thing to me and it is words coming out of his growing up self. Adorable. Completely. I look at him and all of this bullshit washes away.

I have been practicing the mantra, “EVERYTHING ALWAYS WORKS OUT FOR ME.”

I guess I am going to add, “EVERYTHING ALWAYS WORKS OUT FOR JASAN, TOO…”

Tomorrow is a restart. No more negative. Positivity and LOVE always win and bring the best into my life experience.

Washing machines and dryers have been a huge point of interest for Jasan lately. While most kids would love for their mom to say, “Hey babe, wanna go to Monkey Joes?” My little love starts getting excited about my mention of swinging by Best Buy to hang and check stuff out.

Side note: I refuse to take him to Monkey Joe’s because he isn’t at all interested in the big jumpy inflatable things, he makes a beeline for the air compressors BEHIND the big jumpy inflatable things. Of course he would! They are machines. They kinda look like fans. (Major plus.) And, they make a cool sound. (But what MAMA sees are his fingers going into like 4 inches of nasty dust. No one cleans off the air compressors. EEK!)

Ok, back to laundry…

Before this blog was established, I posted a photo on the Following Jasan Facebook page of my little dude in the laundry room at a friend’s home. (see below.) That is where this new obsession with the laundry began. Front loading washer and dryer, top of the line, makes delicate little beep sounds when you press the many buttons on the front of the machines… ah. Digital, digital, digital. Heavenly for Jasan. You leave him in there to do his thing and after awhile he has a pattern going while devouring all of the finite details of it all.

At first I was a little embarrassed that he started preferring hanging out in the laundry room when we would go to their home, but I let that go. I wrote in that previous Facebook post that Jasan and I are blessed with friends that DON’T judge. They love Jasan just they way he is. When I am surrounded by that kind of support, it is easy for me to let Jasan do his thing. But overall, the cool thing though is that I had to dig deeper. Now I AM in a place of complete acceptance. In those types of situations, it was all about ME and my fear about what OTHER PEOPLE MAY THINK about my son, whether it be non-acceptance or judgments.

Yes, in the neurotypical 4 year old’s world it may be weird to be so intrigued by a washing machine. Or, it may be fun to press the buttons for a few minutes, but then would probably get boring. For my son, his brain is completely examining everything. The sounds, the cycles, what happens and the motions in each cycle, how many minutes until each cycle completes, which lights are lit and when… all those great details that bring his brain ALIVE.

If I love him unconditionally for who HE is, why would I want to redirect him to play with typical kid toys that he is not interested in?

I now realize that if I want to be his cheerleader and his number one advocate, I will stand by him and be his encouragement even if some other kid or adult may think what he is doing is odd. That is okay. It’s not odd in my son’s world.

Maybe the autistic brain’s world is wayyyyyyy cooler than you or I see the world.

And, who’s to judge anyway? Acceptance is such a huge thing for all of us. Wouldn’t it be awesome if everyone could figure that out?

And this washer and dryer obsession, it will fade after awhile… but man, he will sure have this life skill down.